So many doctor visits... so much wait

It has been so long since my last post that I don't even know where to start. I wish I could say that a lot has happened since then, but unfortunately I can't. A lot of doctor visits certainly happened since that last blog, but not much improvement on Gabbie's ability to stand or walk. Sometimes we feel very hopeless, and the uncertainty is very unsettling. I wish I could know for sure so many things. I wish I knew what caused this condition in the first place. We have seen so many different doctors and all they say is that it is a presentation consistent with arthrogryposis and that they believe it happened in uterus due to a modification of blood supply at some point during pregnancy. Because it is not a condition that we can define, no one really knows what or how much is involved or affected.

Gabbie had a neuromuscular appointment at Shriners this month. This was the first time that I felt we were moving towards finding out more. The doctor would like to repeat the EMG on her legs (on her calves like previously but also on the quadriceps this time) and this time she needs to be completely sedated for the exam. We don't know for sure if she has all major muscle groups on her legs and how they respond to the nerves. Last time they checked, there was a very weak response on her calves. This exam will hopefully help us determine how much she is actually able to do or try. Sometimes when she stands up holding onto something but sits down after less than 10 seconds, we don't know if she is just being lazy and doing what is easier for her at that point, or if she is actually in pain or can't support her weight. What is really frustrating is that every little step (not literally :) ) involves a long wait. Now that we finally think we are moving forward, we still have to wait 2 months to get the procedure done because there is a waiting list at Shriners and urgent cases have a priority. 2 MONTHS!!!!! And then 1 more month to even hear back from the doctor!!!!!!


As you can see in the picture, she got her second pair of orthotics (AFOs). It doesn't show that well in the picture, but this time they modified the right foot with an insert in the front to push down her foot. The contracture in that foot is so strong that it was overpowering the braces. She has been wearing it for about 1 month now, but at our appointment at Shriners the doctor wrote a prescription to modify the AFOs to have both feet like that and to force it a little more, at maximum ankle plantarflexion. That means we will have to go back to the doctor (whenever Kaiser accepts the prescription from Shriners and authorize it) to have her casted again to make a new mold for the new AFOs.
To add to that, she had been having serious problems with reflux again and last month she actually went through a period of 2 weeks that she vomited every night except for one night (no idea what we did different that one night...). She wasn't gaining weight and that is huge for her because she is already very low weight - she still weights less than 19 lbs at 21 to 22 months. We went back to the doctor and she is again on Omeprazole, but the problem is that she HATES that medicine. We have to give it to her every morning 30 minutes before feeding her anything because it has to be given on a completely empty stomach (it is a compound medication and it needs to by-pass the pH in the stomach). It tastes awful, so of course she doesn't want it, and we tried everything, I mean EVERYTHING! Unfortunately we cannot add any flavor to it, or mix it with anything else because the acids in the stomach would inactivate the drug. Giving that medicine to her every morning has become a nightmare. She closes her mouth, spits it out, cries, screams, tries to grab it, pushes it out of our hands, you get the picture! So now, every morning, we go to her crib, she greets us with a huge smile, and soon after, we have her in our arms, holding her arms down, forcing her mouth open while she tries to scream and cry, looking at us with those eyes, as to say "why are you doing this to me, I was nice, I smiled at you and was happy to see you...". As a parent, can you get the picture and imagine how bad it is to start every morning like that? We do it because we know that she really needs that medicine. We actually tried to not give it to her for 2 days and she threw up both days. She was referred to the pediatric gastroenterologist and we have an appointment scheduled for next month. She doesn't like eating anything, but if you think about it, would you like to eat if every time you did you felt pain? My poor little girl, she has been through so much already and she still keeps the good spirits, always smiling, hugging and kissing us. What a trooper! Now if only we could be more like that...

She is very good at climbing, here she used the car to be able to climb over the ottoman to "read" the magazines.